Well we just spent the last 2 hours with a string of therapists testing Bryce. I couldn't be more frustrated or discouraged.
It's just so hard to hear that his gross motor skills are at the level of a 10 month baby and that we should consider augmented communication devices because he may not ever talk as his main way of communicating.
I don't know what I expected and I am so very grateful to just have him here with us. But damn it, sometimes it all just feels so unfair. I rarely allow myself to admit this because where is that going to get us?
I just keep hoping that someday I'll hear him say he loves me. That someday he'll be independent. That someday I won't have to worry about what will happen to him after we're gone.
But 3 years of a therapy schedule that would exhaust an adult and we've achieved 10 months of skills. Really!?!
I would give anything to fix this for him. I have given everything I have to get him here. I'll continue to fight for him, advocate for him, push him and love him until I physically can't any longer.
But I get to be a little frustrated right now, first. Right?
SOmehow being told something, even if you know it, is worse. Maybe it's the "expert effect"? But I think a clear thing to keep in mind is that NOTHING about Bryce changed with being assessed or labelled. It in no way impacts what he will do or be (unless positively by helping with therapy).
ReplyDeleteThat said, YES, OMG, YES, you get to be a little frustrated!
Sorry I've been out of the following world for the last three months. Hopefully I get back on it!
What she said. Sorry it was a sucky day. Maybe we need to start a post-assessment support group where we drink margaritas and begin every sentence with, "You know what their problem is..."
ReplyDeleteZ tejas?
ReplyDeleteI know there is a reason for assessments. However, no assessment ever really tells the whole story. Experts always see only a part of a child-as a mom I know there is more to any child than what experts see. Love is a force that means more than what experts understand. Many people love Bryce and that will make a difference.
ReplyDeleteAunt Gene
Bryce is a miracle, unique, and wonderous. God is not thru with him. He is a overcomer, he has come so far. Yes, it is slow. Savor the moments with each of them, Gage will grow up so fast, perhaps Bryce slower, still savor the moments. I know you give Bryce and Gage all you have and it is exhausting, and yet Bryce feels the push and Gage just moves forward without feeling the urgent push. Either way they will both achieve all that God plans for them and it is good. They have the most loving of all parents. You will always wish your children told you they love you more, verbally, however most of the time you just have to read between the lines anyway, whether they can speak or not!!! Keep up the good fight, God is in the miracle business, and he is not finished with Bryce. My love to you four. MIL
ReplyDeleteDo you think Z Tejas has enough high chairs to accommodate us? Or would we go... Gasp... Without kids?
ReplyDelete